Maeve Boothby-O'Neill, 27, suffered from severe chronic fatigue syndrome for a decade before she died at home in October 2021.
By Jen Smith
Extracts
An inquest in Exeter heard she had been admitted to the Royal Devon and Exeter Hospital three times that year for treatment for malnutrition.
Devon coroner Deborah Archer concluded Miss Boothby-O’Neill had died from natural causes “because of severe myalgic encephalomyelitis (ME)”.
In conclusion there is no known treatment of ME. The reality of this case is it is not possible for me to say if any treatment could've halted her decline – I hope lessons will be learned in the hope future deaths can be prevented.
Coroner Deborah Archer
Miss Boothby-O’Neill's mother, Sarah Boothby, told the inquest her daughter's death was “premature and wholly preventable” as malnutrition in cases of severe ME was “common”.
After the inquest, Ms Boothby called for “institutional change” in the care of ME patients.
Unless NHS England takes responsibility for the many other deaths from ME that have gone unrecorded and therefore unreported there will be more.
Sarah Boothby (Maeve's Mum)
The inquest heard from medical experts who said there was no specialist unit for ME patients anywhere in the country.It has highlighted the need for properly funded research and better understanding around the condition.
It also noted some doctors expressed doubt ME has a biological basis, a stigma that some groups are campaigning to change.
Andrew Gwynne, Minister for Public Health and Prevention, said Miss Boothby-O’Neill's case was a “heart-wrenching example of a patient falling through the cracks”.
Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.
I am committed to improving the care and support for all those affected, and we intend to publish a final delivery plan this winter which will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
Andrew Gwynne, Minister for Public Health and Prevention
Adrian Harris, chief medical officer at the Royal Devon University Healthcare NHS Foundation Trust, said “everybody involved in caring for Maeve has been profoundly impacted”.
We have learned from Maeve's case and strengthened the information available to staff caring for patients with severe ME.
Adrian Harris, chief medical officer at the Royal Devon University Healthcare NHS Foundation Trust
The evidence in relation to the prevention of future deaths is being heard separately and a hearing date is set for 27 September.
Further coverage
- The Telegraph: ME patient had to fight NHS alongside her disease, says health minister | 9th August 2024 (paywalled)
- The Times: ME sufferer ‘fell through cracks of dismissive’ NHS, says minister | 9th August 2024 (paywalled)
- The Times: Reliving my daughter’s death was relentlessly heartbreaking | 9th August 2024 (paywalled)
- The Times: The Times view on ME: Legacy of Change | 9th August 2024 (paywalled)
- Daily Mail: Father of woman, 27, who died of debilitating ME slams ‘major systemic failing' of NHS and says his daughter ‘did not just fall through the cracks, she fell into a huge hole in our healthcare system' | 9th August 2024
- The Guardian: ‘I’ve been tired since I was 13’: ME patients hope harrowing inquest will change perceptions | 10th August 2024
- Shropshire Star: Father of ME sufferer calls for ‘radical’ reform in the treatment of the illness | 9th August 2024